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Occular Myasthenia gravis (MG)

Autoimmune Diseases | Last Active: Oct 25, 2021 | Replies (47)

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@750scar78

Hi all, I'm new here and wondering about certain symptoms I'm also having. About one year ago I started with the double vision. I saw my eye doctor and he couldn't find anything wrong. It cleared up in a few weeks at that time. Since then it has re-occurred with the droopy eyelids now....both eyes...and distorted vision. I had to stop driving because of this. Also my head wants to drop forward all the time. I also have some urinary and bowel problems. I just saw a neurologist and he thinks it might be Myasthenia Gravis. I will have a nerve test done soon. I'm 75 and wondering why now? I also read that it starts in younger women.....any more info will be appreciated....

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Replies to "Hi all, I'm new here and wondering about certain symptoms I'm also having. About one year..."

Hi @750scar78 -- welcome to Mayo Connect. I'm glad you found us. I'm tagging other members who have talked about MG to see if they have any information for you. @kanaazpereira @gretagean @socalgal @iggeez1416 @whtwater @bea2377 @sunshine56 @saur1994 @dschmidt @lynnes do you have any information you can share with @750scar78 ?

Here is an article on the National Institutes of Health site - Myasthenia gravis in the elderly: Is it different?
https://www.ncbi.nlm.nih.gov/pubmed/18567874
@750scar78 have you had an Electromyography (EMG) test before? If you are able, can you let us know how the test goes for you?

Here is some information about the EMG from the Mayo Clinic website:
https://www.mayoclinic.org/tests-procedures/emg/basics/definition/prc-20014183
John

Hi I'm sorry that this is happening to you as well, I too am waiting on my appointment to have a nerve test done since I saw a Neurologist last week, He said it would let us know more about how much the muscles have weakened. Your symptoms sound very much like mine were and you need to get onto the Meds like I am as soon as possible, the earlier the better. I'm feeling heaps better since before I was diagnosed. All the best and let us know how the test goes, as I will.

Hi John, thank you for your help. I haven't had a chance to read the info you suggest, but I will get to it. I'm having a nerve test done Thurs. the 18th and will let you know how that goes. At my initial apt. with the neurologist he said I was quite weak and from my symptoms he "thinks" it may be this disease. I'll deal with whatever comes my way....what else can I do......

Thanks for the info about getting on the meds as soon as possible.....Did you get the meds from your neurologist? I'm seeing my GP this afternoon and will ask him more questions about this disease. My eyes are really bothering me as I love to read and am having trouble focusing in on the print. Are there any kind of glasses that will help here?

Hi Scar, No I didn't get my meds from the Neurologist, On the day I got my Blood test back and saw what the reading was I went to my Doctor who phoned a neurologist in another City as we don't have one here, who said I needed to go into Hospital right away to start on the medication. Read Dec 31st info on @mylife above. As to the reading I was the same but have been told to wait until the Meds get into my system and they may help. Later on there is what is called a Prism the Optomitrist can fix into your lens if the eyes stay stable with trouble focusing. I found all the information on the internet before I even went to my doctor.

I'm wondering what your blood test showed that put you into the hospital so quickly. I saw my GP yesterday and he told me a blood test wouldn't show MG.....I will see my Neurologist tomorrow for the nerve test and will bring a copy of my blood work. My GP said that "IF" I have MG, it seems like a very mild case....is that possible? Along with my distorted vision, droopy eyelids, wobbly legs and a few other symptoms, what else could it be? Weird!

I think its to do with the Antibodies blocking the function of the protein that is involved in forming the nerve-muscular junction.
My Blood test, the reading of the nuerotransmitter called acetycholine receptor abs < 20.00 ( HIGH ) a normal reading is 0.00 to 0.44 (LOW) The longer you go without the meds that you need the worse the symptoms will get, and the longer it will take for the symptoms to subside, the Med. I'm on is suitable for me and for most people I think. The dosage will depend on how bad your symptoms are. I hope your Dr's get on to it quick. Cheers Margaret.

My blood test showed the acetycholine recptor ...I think it's called....at 254 when it should be at 0.3.....the doctor said it was way too high....hopefully the new pills I started today will help with this.....I'll have another blood test next week hopefully with better results....

Wow, my Dr thought my blood test result was high at 20.00. But yours I'm finding it hard to get my head around, so who decided to get the test done, you said your Dr. said it wouldn't show MG ? I'm so glad now after so long you are on Meds. What are you on?
Have you got the results of the Nerve test yet? I go for mine on the 26th Feb. Does it hurt like my Neurologist said it would? Take care.

Another thought, has the Dr arranged for you to have a Cat Scan on your chest to make sure all is ok with your Thymus gland?